'You're looking well.'

[Daffodil]

Let me start this thread by saying I have come a long way in 13 months and I genuinely manage to feel the blessing in that most days.

 

So why do I get so frustrated when people say 'well you're looking well'. I mean there's a compliment in that, they too are obviously pleased I'm not looking like I did in previous months, and I don't like to look ill, nor do I wish to offend by replying ' well actually I feel like poo'.

Thing is my appearance now often belies how I am feeling most of the time which is tired, achey and uncomfortable.

My hair has grown

back and the shorter style is covering my shunt scarring and bumps nicely, ive put my weight back on, i dont stumble as much and my eyes show im in less pain. I still look very tired but to meet me you wouldn't know what had happened and i often feel placed in the same boat as someone recovering from a nasty cold.

 

Someone complained to me the other day about their head hurting and I found i was irritated by that instead of sympathising. How mean was that? Is that my ego talking, have i got too used to being centre of attention that I can't feel the empathy to others?

So is this part of the adjustment and acceptance folks? Is this about my realising that as my visible scars and physical signs of trauma fade that it is only me that knows that actually its not ' better' that I feel, just ' improving' .

 

I know i am privileged to be recovering so Is it cruel to remind others that how I look doesn't always correspond with how I'm physically feeling or should I just smile and say ' why thank you kindly'. what do you do?

[Gill C]

Daff I could have written your post exactly.

 

Yes people still say I look well even though I feel crappy/tired/have eye pain/head pain! I just let it slide but inside I do get irritated, I also get fed up with people with seemingly little niggles of pain or aches but then I realise its comparative. When I was childless I used to get ' you don't know what tired is until you have a baby'. Now I have a 7 year old so I know its mostly true but I was tired for the pre kids me!!

 

I get annoyed with hubby when he has a headache cos he will whinge & moan & be miserable all day & do nothing about it until I snap & tell him to take painkillers!! I quite often feel he has forgotten how ill I was & how severe the head pain was & that there is usually some kind of niggling headache there most days for me but then I look ok (tired yes & he will say I have panda eyes when I'm really bad) & on most respects I function normally (whatever normal is) but then I realise I am judging him by what I've been through which isn't fair!

 

I don't have any advice for you really just the knowledge that it happens to me too & that you learn to let things go over your head, as Mary would say - don't sweat the small stuff.

Huge hugs Daff cos you're doing so well, that doesn't mean its easy or that you are as you were before sah. Sometimes we are the only ones who know that truth xxx

[Lin-lin]

There will be many here who can relate to feeling somewhat uncomfortable when someone tells us that ‘we look well.’ I am less irritated by it as time has gone on, but I do remember the anxiety it provoked in the early days. I think I am used to hearing it now; but that said it does not follow that I am complacent about every misunderstanding about my brain injury.

 

With regards to ‘you look well,’ I think it compounds our fears about living with a hidden disability, impairment, health issue (delete as appropriate!) It makes us feel that the other person does not believe us. We live in a world where people react better to physical cues and so a person with an obvious disability (which undoubtedly has its different challenges) doesn’t have to explain so hard why they can’t do something. It is obvious to the most ignorant of people that someone with a broken leg is not going to be able to join them in a trek up Snowdon come the weekend. But for us, explaining why we can’t ‘get around’ is very difficult.

 

People cannot feel the effort it takes for us to do something; they don’t see the rest and recovery that is needed before every event. They are largely unaware of the choices we make every day and how if we do ‘this’ today, we can’t do ‘that’ tonight or tomorrow.

 

We also live in a climate which distrusts people with any disability, be it obvious or hidden. Politicians have done an excellent job in whipping up the country into a frenzy about benefit claimants, suggesting that people are trying to avoid work instead. The harsh testing within the benefits system compounds the idea that those with a health issue need to be poked, prodded and tested to tease out their ‘lies’ about their condition. All in all, politicians have created a fertile ground for the idea that we are all malingering or not trying hard enough to get better.

 

So when we hear ‘you look well’ it represents all the above. We fear we are not taken seriously and that the other person doesn’t understand things. We fear this because we know of the ignorance that exists and are concerned that the other person isn’t grasping it too. It makes us hyper sensitive about the situation.

 

There are ways to counteract this. If someone asks you how you are, you can start by saying ‘although I look well, I am struggling with things that are not apparent from looking at me. I struggle with fatigue and memory problems. I have made a good recovery to look at me, but inside, things are different and it has changed my life.’

Somehow getting it in first can be helpful!

[Wem]

I too feel very frustrated by others' lack of understanding and almost indifference to my situation, but then was I any different pre-SAH?

 

As with everything in life our understanding of situations is based on personal experience and you really need to go through something of this nature in order to appreciate the impact it has had on our lives.

I think one of the biggest problems is the use of words such as fatigue to describe our ongoing problems. That word is bandied around in all manner of situations from professional sports personalties, having competed in one too many games, to recovery from brain injury. It is hardly surprising that others struggle to appreciate the problems we face.

 

Fatigue for us is the brain letting us know it has reached it's limit and manifests itself in any number of unpleasant symptons. Loss of balance, pain, diffculties with speech etc. and I find it is the singular most difficult apsect of my recovery to explain to others. So I am rapidly approaching the stage where I stop trying!

 

I also wonder if people see what they want to see? Trying to accentuate the positive may be their way of coping with the long and slow journey we have been on?

[MaryB]

Oh My Darling Daff~ You wrote a perfect letter. All I can say it I feel exactly the same way at 19 months out.

 

We are all at different levels of disabilites (? or whatever we want to call it) and recovery. I am not the same person prior to SAH etc either. My awareness of what I am doing at all times is there most of the time as I have to think - I mean really think when I am walking, do dishes etc. nothing is on auto pilot anymore- except sleep.

 

I must say one of my rewards and I feel like I am bragging but I am not I see this as a postive thing that helps me. I store these words in the back of my brain and think of them when I am not feeling so positive. I am sure some all ready read me writing this but........here it is. In the GR a while back it was brought up about how our spouse feels since SAH. So I asked my husband how he felt with our new life ( frankly we were not all that exciting prior but I certainly did more around the house). My husband responded by saying if anything he loves me more & that is what in sickness and in health means in a our vows. He also said I do not even have any idea how inspiring I am to him and other people, people that I do not even know.

 

One of my new lines for people that kind of "irk" me or say something that makes me feel like they just don't get it ( cause frankly I do not know if we would all get it either??) is that "Well having a SAH & recovery is not for the weak". I subsitute the word "weak" with something different but it woudl not fly here! I also usually say "Yes, I am doing remarkably well for what has happened to me. I tend to become forgetful, exhausted & get migraines daily as the day goes on. But it can always be worse."

Maryb

[kpaggett]

Lin-lin and Mary B offer some good insights here.

 

After a while, I decided that I didn't have to tell people that I had a SAH. It's been hard and liberating at the same time. I felt it was part of my acceptance journey. Just 2 days ago someone asked me to explain how meditation has changed my life and for the first time, I said that I had come to it for purely health reasons, but stayed with it for transformative reasons and he asked me what the health reasons were and I did not tell him. I just said they were serious.

 

I had to be so strong within myself to not blab about it as if it were the most important thing. It isn't...especially not in my meditation practices. Because I'm working hard not to be defined by SAH, this is part of my tail. However, I still struggle with it and I'm so grateful that those who can actually offer an understanding ear...you all...are here for me and I am here for you. Acceptance, I've learned, is a process of more than thoughts...it involves actions and emotions too.

~Kris

[Louise]

Oh that has been said to me many times, I choose who I say just the plain thank-you or Aw thats kind Im lucky to look ok but actually Im 'pants'

I personally dont think it cruel to remind others how you feel at all, because after all if you look good they're never gonna know just exactly how you do feel, I always think it better to talk be up front about how you are.

[Winb143]

Daff,

Wish I got a compliment like that, all I get is "Oh Win you look just like the Old man" (My Dad).

He's been dead since 1999 ! That's my Sis Anne for you !! never mind I still love her. (sometimes) grrr.

I feel shattered a lot but as my Mum always said "Laugh and the world laughs with you, Cry and you cry alone.

 

I insist Daff that you cheer up and laugh at my silly reply. Okay pal xx now smile xx

You seem to be improving every day. Try and forget what others say or do, guess it's their way of saying

Hope All is Well with you xx

Love

WinB143 xx xx

[Skippy]

Daff

I can sympathise totally with you - even nearly seven years on. In fact at the weekend I had to explain to my parents that there are still days when I feel like I'm only a couple of weeks into recovery. The trouble is because we're walking and talking people automatically assume that we're Ok and over it. I tried to explain to my parents and hubby that just cos I'm working full time again and am doing nearly all the things I did before the SAH it doesn't mean that I'm completely OK and fine with everything. I still get very angry at what happened and then frustrated that I've gotten angry about it!!

 

The only advice I can give you is to proud that you have 1) survived 2) come as far as you have as well as you have and 3) ignore the people who will never understand what its like constantly living with an SAH and its aftermath.

 

And when people talk about headaches - I just look at them and, depending on who it is, say "You don't know what a headache is - I am the Queen of Headaches".

Hold your head up high Daff - you're an inspiration on here. Unfortunately there are always people who do not and will not understand - that's why we are all here

[Lin-lin]

Talking of discussions on headaches.... when I gave birth in August last year, my epidural went wrong, leaving me with what is called 'an epidural headache.' I was put in my own room as it was recognised that the ward was a bit too much for me, (understatement!!)

 

A midwife, totally unaware of my SAH, came into my room and said very sympathetically, 'Oh Lynne, is this the worst headache you've ever experienced in your life?'

My reply was to laugh midly and say 'erm, not quite.'

[SarahLou]

I don't want to be 'Sarah, who had the SAH' any more, I just want to be 'Sarah' again.

Does that make any sense to my fellow re-arranged brain friends !?

SL Xx

[Skippy]

Hi Sarah

Yes I can understand and sympathise with that - however at the same time I'm at a stage, I think, where I'm quite proud of the fact that I survived and have come as far as I have. The shock on peoples faces never fails to amaze me when they find out - and I still get the "Gosh you're lucky" and still reply "I feel like that now, but had you said that 6 years ago and I would have disagreed"

[goldfish.girl]

Hmmmm....Daff, it's taken me a while to think through a reply.

I am a few years on and usually only mix with people who don't know about the SAH in very small doses so I hardly ever feel the need to explain any more. I don't usually mention my headaches or balance or confusion to anyone unless I have a really bad day, in which case I will let someone know as I live alone with my son. It makes me feel better for his welfare if someone is aware that I'm worried about feeling unwell that day.

 

I'm lucky that I no longer have to explain a bad day to close family, they can see it for themselves & understand that some days I do not get dressed or go out because I just don't have the energy or I took strong pain killers - although I did have to gently remind my dad this week before we went on a shopping trip that I can't do several shops over several long hours. My dad is a bit old school, hard core about illness, but he 'got it' and the gentle reminder made him change his list of where we had to go in one day without any annoying comments on his part.

 

I did, however, explain the situation to the people I work with when I started voluntary work. The manager left it up to me to decide if I wanted them to know. Very occasionally I find explaining it easier on my morale than knowing people will think I'm really thick if I don't explain it.

 

I actually feel more annoyed now if I have to explain things to strangers. For example, booking my holiday this week, I had to fill out a form about why I need assisstance at the airports. I hate this because I try so hard to be like I used to be. During the conversation with the staff I made a classic 'new brain' stupid error when I thought that all the people on the flight would be staying at the same hotel In these circumstances it's just easier to tell people that I have a brain injury. It did have my parents, son & both members of staff laughing quite a bit!!

 

I like it now when I'm told I look well, it' a compliment. However, if an ATOS doctor told me the same I would instantly be terrified that they don't believe I am not well It's such a difficult thing to explain to anyone who hasn't been through it but try not to take it as a belittlement of how you are feeling, maybe you really do look well at the time it is said. That's a great thing, rocking the looking good thing when you feel like we do inside

Michelle xx

[DawnS]

SarahLou said:

I don't want to be 'Sarah, who had the SAH' any more, I just want to be 'Sarah' again.

Does that make any sense to my fellow re-arranged brain friends !?

 

In my new role, I made the decision that only the staff who needed to know should be told about sah, so my team leader, team senior and department head know about it. I just wanted to get to know people first. I don't know about anyone else, but I have found that when the brain injury is mentioned, people speak to me like I'm a bit simple...they will talk s.l.o.w.l.y which drives me nuts.

 

Anyway, a few weeks back, I was asked by HR if i would write 'my story' for the company newsletter (methinks they were after a bit of free PR...look what we did for Dawn...or am I just cynical?). I thought about this for a nano-second as it seemed a bit personal to spread out over the entire U.K section of the company. I'm beginning to wonder if this is the best course though as recently people keep telling me I look 'stressed'. I am not stressed but I am very tired, many days I don't know how I get through 4 hours let alone 8.

 

Perhaps it would be better if I told people about sah so that they might understand why I look so rough? But then again, I have friends who were there for me throughout my hospital stay who now think that I'm fixed and that maybe it's time I 'moved on'.

[MaryB]

I have lived and work in a small town for 20 odd years now. I can run into 6-10 friends or clients while at the grocery store. I pass out my personal cell number to "good" clients all the time if they may need help over the weekend with their sick pet. I live and work in a different enviroment than most of you.

 

I have learned that for myself to "cope" at work more so when tired. I sometimes asked the same questions a few times or cannot find the word I am looking for, or cannot 'spell" at all etc.. It is just easier to say I am a stroke survior and somedays I have problems with words and writing while talking (that is a big problem I have at work).

 

I do not think this makes people feel uncomfortable the way I say it but like Michelle it is that or look "thick". I already let my hair go gray so I am sure they are thinking worse on my bad days than what things are! It really does not bother me at all to have to tell people.

 

Maybe that once a week when I am super woman I do not have to tell someone because everything is working great upstairs. Of course I am probably running with sissors that day as well shouting "Look at me! Look at me!". But when I stand looking at spices for 30 minutes I have no problem asking a fellow shopper for help etc. Also my bigger thing is the fact I cannot get the cart past people or around the corner without much thinking because of the vision loss there. I normally do not say anything when I am doing but I should! Because I know people are looking at me like "Just go around already!!"

In my own way I think people are being educated and enlighten!

 

PS I picked up a few groceries for neighbor last week - she wrote them dpwn and cirlced them in the advertisement. I got 3 right and 3 wrong. My other friend asked me what Kim was thinking having me do some grocery shoppping for her, was she crazy?

maryb

[goldfish.girl]

Dawn, I wonder if HR would be so keen to publish your story if you copied & posted some of your posts on the back to work thread in the early days of your return to work? Yes, they have done great things since and you have achieved things you thought you might not be able to, very much to your credit but do they really want the 'whole story' or just, as you say, the version that makes the whole company look great?

 

I have found that people speak more politely, with understanding & with compassion when they know rather than slowly. And occasionally, like Sami has said, I get the look of awe at how well I have recovered. Both are nice to have & hear

Michelle xx

[Lin-lin]

It is true that mentioning the SAH in some conversations is a great way to shut someone up. I call it dropping the 'B Bomb', (brain haemorrage bomb) and it's a pretty mighty weapon!

[Daffodil]

Thanks team BTG, knew you lot would help me with my pickle of a problem.

 

Skippy and Sarah its good to get the perspective from Further on the recovery line. I can see not wanting to be ' the person who had that awful thing happen' is probably where I am headed to in time but right now wrestling with the ' but cant you see im not better' ....ah well.

 

Lin I think your perspective on the British attitude to disabilities , especially those that are hidden, is spot on.

 

Kris, the meditating is helping me live in the now more, glad it is for you too. Michelle, my family are good at checking my eyes, that usuall tells them how I am that day, sound like your DAd gets it.

 

Win, your sister sounds a hoot.

 

Dawn, I think do the article by the way but keep it honest! What was hard as well as good.

 

Mary almost forgot to tell you how well you look with your hair naturally grey:lol:..

[MaryB]

Daff you are laughing at my gray hair????

[kpaggett]

Just an aside...

I use a mirror as therapy sometimes. At first I really couldn't reconcile the way I felt with how I looked in the mirror. I felt so alien and yet I looked like Kris. Now I feel like Kris with deficits and I use the mirror to remind myself that I don't look drunk even if I feel that way. It sometimes helps me to orient the internal perception to the external one that everyone else sees.

 

I need to see what they see too sometimes and yet my own mind gets in my way. Maybe you could try something like repeating something you heard like, 'I look well today' or whatever was said to you. When you actually see yourself, then you realize that yes, you do look well and that's a good thing.

Fun times,

~Kris